Episode 03: Nothing About Us Without Us- Community Involvement in Research
This podcast explores the role of the community advisory community (CAC) in our research at CAN-BIND.
Dr. Wegdan Rashad: Hello and welcome! You are listening to the CAN-BIND podcast and I am your host, Dr. Wegdan Rashad. Today is our 3rd podcast episode and we decided to focus on an important aspect of our research and that the community…and how we get the community involved in the work we do. I am joined by Dr. Sagar Parikh who will give us an overview of the subject and then we have a discussion with 2 of our wonderful community members, Madeline and Michael, on their experiences. Thanks for joining us!
Dr. Sagar Parikh: Hello, I am Dr. Sagar Parikh I am a psychiatrist and researcher with the CAN-BIND Research Program. What I’m going to talk about today is how to make research more effective. We might have an idea that the best research comes with a white-clad scientist sitting around a laboratory and concocting great schemes…but actually research is meant to be useful, and if it’s going to be useful it should be aimed at helping people who are suffering from some illness. How do you help identify the right kind of research to help a person who’s dealing with an illness? Well, you should know a lot about the illness but maybe you should start with asking the patient, what bothers you the most about this illness? Of course, we can ask about symptoms but doctors value certain symptoms, and patients value certain symptoms and they don’t always agree on which symptoms or for that matter side effects are most bothersome or the most important to change. Also, in science what are the best ideas? Of course, scientists themselves can have great ideas…but what about ideas from the general public? What about ideas from people experiencing illnesses and having their own ideas about what causes it, what makes it better and, what research could or should be done to make their lives better?
In recent years, the importance of the patient voice has really been recognized in research and the way it has been done is to include patients in the process of setting the research questions, understanding the research results when the study is done, and using that patient experience in crafting a message of what do these results mean and also asking the patient, how do you think the public and patients at large would like to know about this?
This idea of integrating the patient voice in research design as well as the reporting of results and making sense of those results has been formalized in many research groups now by the creation of something called a community advisory committee. The community advisory committee or CAC is a group of people that might be patients, might be family members of people who have experienced this illness or other general members of the community who have a particular interest in a health area. This group meets regularly and is associated with a specific research project such as CAN-BIND and provides strategic advice and very human advice about what to look at, how to understand it, and what to do next. CAN-BIND started its research CAC almost a decade ago and it has been invaluable in giving us ideas on what to look at and what to emphasize. We have integrated individuals from the community advisory committee into smaller teams where we actually look at very specific questions about research. We have asked individuals on the CAC how do you recruit and, attract patients to participate in clinical research? And finally, very extensively we have invited CAC members to take the scientific articles that we create from the research and help translate them into meaningful education and learning for the general public. CAN-BIND really values its community advisory committee and you are going to hear a few comments from members of our CAC about what they do and the importance of their roles. Thank you.
Wegdan: It is clear that having a CAC brings much value to our research and to the community at large. Now we are joined by 2 of our CAC members; Madeline and Michael. Let’s start with Madeline. Hi Madeline, could you tell us a bit more about yourself?
Madeline: Hello, my name is Madeline and I am a new member of the CAN-BIND CAC. A little about myself I am a country girl at heart even though I am living in Toronto right now. I grew up in the country and I just love spending time in nature, I like hiking, biking, just hanging out with friends in the sunshine, and I really enjoy staying active through running and trying different sports. I recently graduated from UofT with a major in Psychology, and I am planning to go back to school to pursue counseling psychology after I take some time off to figure out my next steps and to get experience working in mental health settings.
Wegdan: You joined us in February 2020, tell us how that came about?
Madeline: So I am a very new member and that came out of volunteering I have been doing as a peer supporter for the past year at ‘Hope and Me’ Mood Disorders Association of Ontario, which is where I met Andrew, who is the co-chair of the CAC and he works at MDAO as the research manager, and knowledge translation manager. I told Andrew that I was interested in getting involved in mental health research and he recommended the CAC.
Wegdan: Glad to have you onboard, Madeline. Can you share with us your personal interest in the realm of mental health and depression?
Madeline: I’m interested in this area of mental health and depression research because of my own journey growing up with a lot of anxiety that I didn’t really understand until I learned more about mental health in university. I always kept a lot of difficult feelings to myself, and as I grew older my anxiety got worse, and it would feed into negative thoughts and insecurities. And it came out in physical changes too, in high school I remember a specialist told me that I could have IBS which might have been caused by stress that I was experiencing and there wasn’t really anything I could do for the IBS, and that was it. I wasn’t given any ways to cope with stress and anxiety when I was younger.
And it got worse when I went to university and I went through a difficult period with a lot of pressure from school and challenging relationships that just brought my anxiety to a new high. And I started getting a lot of nausea and stomach pains. I completely lost my appetite. I remember if I even ate a like piece of toast, I would get sick. and I was constantly getting colds and head colds on and off for a whole semester, and of course I went to the doctor again and I wasn’t given any answers I was just told I probably had some kind of bug that would go away on its own. I was never asked by about doctors about stress and anxiety. I never brought it up either though, because I didn’t think it was important. But, it was important, and the more it went on, and the more serious things got, I started to lose motivation and get those depressed feelings of ‘I couldn’t get out of bed in the morning.’
I had a really hard time focusing on school, I was crying in public. I felt just totally alone and vulnerable. And I remember one day at the library I felt like I had completely lost control of my thoughts. And I couldn’t snap out of it, I couldn’t snap out of thinking and seeing these really scary, negative things, and it really scared me at that point. But it took me a while to seek help, because I, first of all, didn’t really feel like I had the time with school, student life, and everything going on. And I didn’t feel like I had a real problem or at least a problem that was treatable. And it took me until my third year until I finally saw a counsellor on campus. And at that point, I was just really fed up with feeling helpless, and I told myself I wanted to be someone who could make things happen in my life. Instead of always feeling like things out of my control were happening to me. And I wanted ways to deal with those feelings of helplessness and what was going on, and after seeing a counsellor it really did start to get better.
I still had ups and downs. and I still have ups and downs with my mental health now, but now at least I know that there are actually resources that can help. And I only wish I took that step to speak with a counsellor way sooner. And a lot of that, and a lot of what I have experienced has been the reason why I want to get into mental health, and get involved in research on depression, so I can continue to learn and learn from supporting other people and hearing their stories as well.
Wegdan: That sounds like quite a journey! Now that you are part of the CAC, what has your experience been like so far?
Madeline: Having joined in February 2020, my introduction to the CAC was in the context of COVID-19, and the first thing that I participated in was the creation of the COVID-19 coping videos. And I found that process empowering, with the experts asking us on the council what we wanted to hear about, or what we wanted help with, and asking what tips we even had to contribute to the videos. I saw how seriously our suggestions were being taken and that was really one of the reasons why I wanted to join the CAC in the first place. I was just so excited to hear that there is this opportunity for people with lived experience to become a partner in their healthcare. And that’s just such a liberating concept to me. And it was rewarding to know that we had played a role in the production of those videos, that would be hopefully a helpful resource for people at such a scary time that we are all going through. And I especially loved to see Maryanne’s video on sleep hygiene up there with the experts on the website, because we both joined the CAC around the same time and I just thought it was so brave of Maryanne to get in front of a camera and share her insight. And I can’t wait to see what comes next.
Wegdan: Thanks for that and if you are interested in checking out our COVID-19 coping video series, check out the transcript where we have all the links available for you there.
Our second guest, Michael, has been a member of the community advisory committee since 2015, so welcome Michael, and could you tell us more about yourself?
Michael: Okay, well I am 61 years old, a father of two amazing daughters, we are all animal and nature lovers, we have lots of pets and our own personal zoo at one point of time we had two cats, two dogs, a bird, a lizard, some fish, and a turtle.
Wegdan: Oh wow, that must have been fun! What are some of the initiatives you have gotten involved in at CAN-BIND that interested you?
Michael: Well, I think that being able to take the information we get from the researchers and so on. Work with putting it in a format that’s comfortable for the general population to read. Sometimes we get back to the researchers on something that we thought maybe a bit short, maybe we could do a little more. We are really listened to, really well. So that is great. I find that it was a bigger thing than I thought it was going to be. For example, we did the CHOICE-D document which was a collaborative effort between CAN-BIND, Mood Disorders Association, and I think a couple of others. And CHOICE-D is a document that is an educational tool for people affected by depression.
Wegdan: Michael mentioned the CHOICE-D guide, which is a great example of how the CAC and our clinicians worked together to produce an educational tool that aims to raise awareness and knowledge about your treatment options with depression. By increasing access to this information, the project encourages people with depression and their families to engage in shared decision-making with healthcare professionals and to take an active role in their care.
To check out the guide for yourself, please follow the link in the transcript: https://www.canbind.ca/education-outreach/community-engagement-initiatives/choice-d-project/
There’s a slogan that goes “nothing about us without us”. And I think it can effectively sum up why it is important to have people with lived experience take part in the research process. Before we go, I wanted to share a closing remark from Madeline.
Madeline: I want people to know that depression is a real health concern, and there are real ways to treat it. For a long time, I dismissed my own anxiety and feelings of depression, because I thought they were just signs that I was failing, and I found my problems didn’t compare to what other people were struggling with and I just thought that I had to rise above it on my own.
But what I have learned from my journey and hearing the stories of other people, is that depression doesn’t discriminate. You don’t have to be a certain age or from a certain background. I have heard depression be compared to drowning, and how you could drown in an ocean or a pool of water. The amount of water doesn’t matter, what matters is that you can’t breathe. And I want to tell people to stop putting off getting help because there are services and treatments that can help you breathe again.
Wegdan: Thank you for joining us!
Madeline: Thank you so much. Hello to everyone who will be hearing this and hello to the CAN-BIND and CAC family. I am just really happy to be here!
Wegdan: And that’s about it for today’s podcast. We hope you learned something new and enjoyed this rich discussion. Please visit our website (link in the transcript). You can also join our CAC if you are interested, reach out to us at firstname.lastname@example.org.
Also, don’t forget to follow us on social media, where you can stay up to date on the latest in depression research and community initiatives. Find us on Twitter and Facebook by searching: “The CAN-BIND Program”. See you there!
We would like to thank Michael and Madeline for joining us. A big thank you to Dr. Sagar Parikh for taking part in the planning and recording of this episode.
Thank you for listening and until the next episode, goodbye!